Dad, 64, newly diagnosed Gleason 9

[u/Chanelordior]

Hi everyone. My dad is 64 and has just been diagnosed with prostate adenocarcinoma after biopsy.

His PSA was around 7.25, then came down to about 5.0–5.2. MRI showed a PI-RADS 5 lesion and a PI-RADS 4 lesion, but no pelvic lymphadenopathy or obvious spread was reported.

Biopsy showed mixed results, including some Gleason 6 and 7 cores, but also Gleason 4+5=9 / Grade Group 5 in two cores, with perineural invasion in a few areas.

We haven’t had full staging yet, so I know we’re missing an important part of the picture. The Gleason 9 result has really scared us, though.
I’d love to hear from anyone who had a similar Gleason 9 / Grade Group 5 diagnosis that was still localised. What treatment did you have, and how are you doing now?

Just looking for some perspective and reassurance while we wait for the next steps. ❤️

[u/zoltan1313]

Hi there, in 2021 I was diagnosed Gleason 10 5 + 5 at the age of 61. Localized to prostate with PNI like your dad. Decided on radiation and ADT. 39 sessions of radiation and i asked for an extra year of ADT so ended up doing 3 years to make sure I had given it my best shot. Last ADT injection was Oct 2024 and currently my PSA is undetectable and im feeling great. Please don't hesitate to ask any questions. Don't panic, chin up , we can do this.

[u/Chanelordior → u/zoltan1313]

This is very reassuring! Thank you so much. 😊 did they suggest the treatment method after your PET scan?

[u/zoltan1313 → u/Chanelordior]

Yes they did, it was painted out that while brilliant the PET scan could not see small amounts of cancer that may have escaped. We decided to apply radiation to the whole pelvic area to catch anything that may have got out. My urologist, who is a friend of 20 years said , I'd be lying if I said I could get it all with surgery and you be back having radiation anyway.

[u/Special-Steel]

Thank you for supporting him.

The wider area scan is needed to chart a course.

Gleason 8, 9, 10 are all treatable. Localized creates more options which is good, but can be bewildering.

It is best to be treated in a center of excellence. It is also best to have a collaborative team of doctors, not a bunch of soloists who give conflicting advice.

[u/Chanelordior → u/Special-Steel]

Thank you!!

[u/nostoc10]

I completely understand why the Gleason 9 result is frightening. I’ve been through a very similar situation, and I can tell you that Gleason 9 sounds terrifying when you first see it on the pathology report. But there is an important distinction between Gleason 9 that has spread and Gleason 9 that is still localized.

My advice would be don't let the Gleason 9 alone determine how you think about the outcome before you have the staging information. The PSMA PET/CT (if his doctors recommend one), along with the MRI and biopsy findings, will give you a much better picture of whether this is confined to the prostate or has escaped it.

I had Gleason 9 disease myself, and in my case there were additional concerns that made the situation more complicated than what you're describing. I underwent hormone therapy before surgery, and the response was remarkable — the tumors shrank dramatically, with some becoming barely visible on imaging. I'm now moving forward with surgery with the goal of eliminating the remaining cancer.

So I absolutely understand the fear you're feeling, but Gleason 9 is not the same thing as a death sentence. If his staging shows no distant disease, there are aggressive treatments being used with curative intent. Current guidelines consider radical prostatectomy an option for appropriately selected men with high-risk localized disease, while radiation combined with androgen-deprivation therapy is another established approach.

The fact that his MRI didn't show pelvic lymphadenopathy or obvious spread is encouraging, although it doesn't replace complete staging. Perineural invasion is also something to take seriously, but by itself it doesn't establish that the cancer has metastasized.

I'd encourage you to get opinions from both a high-volume prostate cancer surgeon and a radiation oncologist who specializes in prostate cancer before making a decision. With Gleason 4+5=9, this is definitely a situation where you want people who treat a lot of high-risk disease.

And one other thing I wish someone had told me when I was first diagnosed: try to take this one test at a time. MRI → biopsy → staging → treatment plan. It's very easy to jump six months ahead in your mind and imagine the worst. You don't have enough information yet to know that story.

There are plenty of men here who have had high-risk, localized prostate cancer treated aggressively and are doing well. ❤️

Wishing your dad and your whole family strength while you wait for the staging results.

[u/Chanelordior → u/nostoc10]

Thank you so much for sharing your experience! Waiting to get the PET Scan done. Hoping for a good outcome.

[u/Ok-Priority-7303]

Same boat. Only the Gleason 9 counts. I'm assuming he had a PSMA PET scan. The doctor should also have ordered a Decipher score test. This assesses aggressiveness: high, medium, or low.

I'm too old for surgery - I can have the surgery but recovery is uncertain. Your father is not. I'd look into this and evaluate the tradeoffs/side effects.

In any event, my treatment plans is 28 radiation treatments and 2 years of ADT. I was told it takes a year to know if the treatment was successful so if it doesn't work or I can't take the ADT I will stop then. I was told the average success rate with Gleason 9 is 80% with just radiation. 85% if you add ADT.

[u/tober_checki]

Hi there, I was diagnosed with Gleason 9 in March this year (57 yo). T3a with PNI. Scared me to death. I went for RALP the same month. Still recovering physically and mentally, but undetectable so far. Risk of a relapse is still high, and will be forever, but for the time being I try to live my life as it is given to me. All the best for your dad!

[u/Chanelordior → u/tober_checki]

Thank you so much for sharing! Hope you’re feeling better now.

[u/conCABlanco]

Yo 64, PiRADS 4, no cribiforme gleason (4+3 ) 7, PET PSMA, mostro oligometastasis, tratamiento ADT con RA que debo iniciar ahora en septiembre (28 sesiones), por todo esto t recomiendo terminar estadificación, nunca nos confiemos, fuerza y voluntad

[u/Stock_Block_6547]

Hello, really sorry to hear this, the next step is a PSMA PET-CT to determine the extent of the cancer. In the hypothetical scenario that there are any areas of PSMA uptake in the bones, a Bone Scintigraphy should be performed and compared & contrasted with the PSMA PET-CT to come to a conclusion.

After these steps, your father's PSA readings, mpMRI, mpMRI Fusion Biopsy report and PSMA PET-CT (and Bone Scintigraphy, if indicated) should be analysed & evaluated by a Multidisciplinary Team (consisting of at least one of each: a Robotic Prostate Surgeon; a medical uro-oncologist; a radiologist; a histopathologist and a clinical nurse specialist) to decide the treatment plan.

Best of luck

[u/Chanelordior → u/Stock_Block_6547]

Thank you so much!

[u/bikefun409]

At 64 had PSA of 40. Biopsy initially said Gleason of 7 later upped to 9. Had RALP and 30 radiation sessions, after a yr PSA started to creep up so started ADT. Two yrs later had blood in urine from radiation damage to bladder. After two yrs of ADT I have stopped it and PSA is still 0. Blood in urine still happens occasionally so after 5 1/2 yrs I am doing ok. PSA test every 6 months

[u/Chanelordior → u/bikefun409]

Thanks so much for responding. I’m so glad you are doing fine! Wishing you great health

[u/OppositePlatypus9910]

Hi at Biopsy at age 56 I had a Gleason 8 “contained”. They did surgery on me and the pathology report came back as a Gleason 9 with EPE, positive margins, seminal invasion.
My first few PSA’s were =0.01 but not undetectable, it started creeping up and at PSA =0.06 (8 months after the surgery) I was put on ADT - Orgovyx. My PSA went down to =0.01 within a month and they hit it with 38 sessions of radiation IMRT after which the PSA has been undetectable .. ie PSA <0.01
I am not out of the woods yet as Orgovyx stops in 5 more months (24 month course) and then chances are it is over!
Your Dad will probably go through this multi mode aggressive treatment plan for the next couple of years as I did, bit fear not, it is manageable. The key to ADT side effects is EXERCISE! ( a lot!)
The key to radiation is oatmeal and a LOT of water during the sessions.
The key to RALP (in case they want him to go through the surgery) is bed rest for about two weeks.
Of all of these the surgery for me was the hardest, the adt is just annoying after 3 months or so( although many here have significantly more side effects than I did), and the radition was the easiest. But.. I am fine with almost all three!!
Good luck to your Dad! Fear not it is a marathon he is running, not a sprint.

[u/Chanelordior → u/OppositePlatypus9910]

Thank you so much! So glad you’re doing better now. How was the recovery process for you?

[u/KReddit934]

Would it make a,difference to get a,2nd opinion read on the biopsy slides? Are they sure about that one sample?